Ontario Adult Autism Research and Support Network - OAARSN

Ontario Adult Autism Research and Support Network

OAARSN offers information and communication tools to connect adults with Autism, family members, caregivers, friends, support workers, teachers, administrators and policymakers. We can all benefit from the opportunities for mutual support and encouragement and the sharing of knowledge and experience. Our efforts to promote positive approaches and best practices in supporting adults with Autism can help all who live and work on the front lines.

Looking Back
Reflections in 2021 on the 46 years of Tim’s life since the 1975 speech.

But glad to have sat under 
Thunder and rain with you,
And grateful too
For sunlight on the garden.

(Louis MacNeice, 1907-63)

Tim is now fifty-two. In the years since he was six, I cannot report any great insights with regard to Autism. What Tim is seeing or hearing or undergoing at any given moment, particularly if he is distressed, I do not know. Vision and recognition are clearly distinct capacities. Sounds, smells, colours, memories, impulses, all undiluted, mix together to produce what Tim describes as a “jumble of experiences and sensations”, at times overwhelming.

Autism was still an uncommon diagnosis in the 1970s. Parents struggled to learn, to develop recreational programs, promote research, and to encourage school boards to provide appropriate classes and supports. The first Autistic Society in Canada was formed in Toronto in 1971. We worked hard for years, in both the Metro Chapter and the Ontario Society to fund summer day camps for our children and residential services for autistic adolescents. Tim was the sole autistic person that I knew who wasn’t on a waiting list for Kerry’s Place when that service was finally in place. The only residential programs he ever attended were the three-week August camps run by the Integra Foundation (later to become the Geneva Centre) in the late 1970s. Each child had his own counsellor and his own program, and operant conditioning was the order of the day.

Tim has undergone many forms of therapy, usually with great patience. Anything involving drugs generally and very quickly proved a disaster. Less invasive and healthier alternatives such as reflexology, sensory integration, music therapy, mindfulness, auditory integration training, the Masgutova Method of “neurosensorimotor reflex integration” all came and went. They were largely designed to help Tim’s brain and body work together, and to help him with sensory issues. When he was young he could only organize information through one sensory channel at a time. For example he could either make eye contact with another person, or he could listen to what they were saying to him, but he couldn’t do both at once. He tells me – and it is evident – that he has greatly improved in this area. Whether it is time and maturation or therapies or a combination I do not know. He still has huge challenges. His Crohn’s, thanks to a very savvy nutritionist, is kept at bay through diet and supplements.

Watching Tim grow and persevere has been a humbling and moving experience. His courageous acceptance of a hard fate, his deep appreciation of his family and his friends, and his determination to “be himself”: all are a part of who he is. Tim has a deep capacity for life, and a longing to share it in all its beauty and all its suffering, with those he loves. He knows that we are helpless to ease many of the hard times.

Tim was twenty-four when we discovered that he could communicate with us on a QWERTY keyboard. This greatly affected how we and others perceived him. It also helped us to know of his hopes and fears, his amazing sense of humour and his penetrating insights, and to be far more collaborative on our journey together

It would be difficult to overestimate the extent to which the trajectory of our lives was determined by the deeply negative assessment of Tim’s human worth, particularly in his early years, by the helping professions. It left us forever looking for the door. Life with Tim has been a determined and largely successful effort to escape the system.

It was a relief when, at the age of six, Tim moved from the treatment world to the ministrations of the Metro Toronto School Board. Though they could do little for him, his teachers did not regard Tim as a dud. He was just a little boy, among many others, with some huge challenges and some sweet gifts. A number of his primary teachers truly cared for Tim and enjoyed him. The focus in those years was always language: his greatest deficit. Tim does not speak. Given the size of the classes, Tim was usually accompanied by someone we had found to support him. By his teen years he was in school only two days a week. Since he needed one on one accompaniment wherever he was, we tried to find more hopeful places for Tim and his support to spend those few hours.

For people with complex high needs, the landscape when they leave the school system is bleak. We were urged to put Tim on a waiting list for “skills training” and “transition to employment and community living”.

For a fast-moving man with no speech, obsessive-compulsive disorder, pica, Crohn’s, high anxiety and powerful sensory difficulties, life in the world is a minefield. This we know from hard experience. With good support, if the stars are correctly aligned, he can make brief forays into those places and spaces that are ready to welcome him. And so, for the better part of half a century, we filled out the questionnaires that secured enough individualized funding for Tim to safely explore some options.

These questionnaires are almost as depressing as the doctors and social workers who had urged institutional care. If you can describe your son as a menace to himself, physically unrestrainable, and (apparently) totally without reason, and if you can describe yourself as on the brink of insanity, you are likely to get the funds. And the funds are vital.

To answer a question is to accept the assumptions on which the question is based. There is no choice. There is no opportunity to ask better questions. One can only seek better answers when it comes to how that funding will be used. This we endeavoured to do, working closely with several other families who had a son or daughter with complex high needs. Many activities and projects were planned and tested. Some of them even worked.

Forty-six years of life plans and proposals, MAPS and PATHS, (Making Action Plans and Planning Alternative Tomorrows with Hope), crises and upheavals, meetings and consultations, and some wonderful support people learning and caring and helping to hold things together. And crucially, faithful accompaniment by close friends through Tim’s circle of support, and a lifetime of accompaniment by his sister and brother, who have quietly undergone much for the love of Tim.

Our young adults were not heavily into “self-determination”, as the term is often used. (Individualized funding on Speed, as one observer put it. A lot of action but not much insight.) Interdependence is a fact of life for all of us, and it shapes our capacities. While secure in their family homes, our adults were very much wanting to strengthen and enlarge relationships beyond home, and to be engaged in something that each found meaningful.

“Finding a purpose is hard” Tim remarked one day, “when I spend so much energy just trying to stay calm and in control. People are in a judgmental mood unless they see us as one of them. Mostly they see us as bad people that they are trying to reform.” The dominant assumptions in the public domain are tenacious. Our folks are seen as having nothing to say and little to contribute. They are simply recipients of service. Tim’s determination to “be myself” – nevertheless! To be accepted as I am. To be acknowledged as a human being, is shared by many of his autistic friends. 

Tim knows he can’t change the world. The people he changes are those who live with him and love him. Patience, peace, compassion and encouragement – these are what help Tim to grow. Had we to do this over again, I would give much to acquire these qualities in greater measure. I am not by nature a patient person, and this I deeply regret.

It has been remarked that life is a journey, not a destination. This is absolutely true, but for the parents of an adult with complex high needs, the journey takes on a particular urgency. When the parents are gone, something has to hold. And that something has to be more than a capitulation to whatever happens to be available at the time.

As our families worked together and the years rolled by, we learned that real estate and legal agreements and funding are not insurmountable. It was the support piece that kept eluding us. Individually, our families had some fine support for a few hours each weekday. Not surprisingly, these supporters also had commitments and relationships of their own.

The ideal scenario, as we envisaged it, was to enable a kind of reverse take-over of the family home, once proper support had been secured. The parents would withdraw to an apartment close by and make the necessary arrangements to secure the property for their son or daughter. One definition of the word “idea” in the Concise Oxford Dictionary is “an eternally existing pattern of which individual things in any class are imperfect copies.”

Our “idea” was to find for each family what we called a grounder. A person who would commit to a long-term, caring relationship with our son or daughter, holding things together as other support people came and went, and doing very much what parents do. The support role, needless to say, is crucial. As is the imprimatur of the person being supported. But where does one find a stable, responsible caring person who does not already have a life or – if young – is willing to forfeit theirs to make such a commitment?

It was largely the longevity piece that made “imperfect copies” of our ideal would-be grounders. The necessary supports, I now believe, can be generously shared by good people, each of whom brings his own gifts, as long as there is a team leader to co-ordinate. There is safety in numbers. And if the person being supported has a reliable means of communication, this is hugely enabling in terms of getting it right. 

A good support relationship is as nuanced and unique as the individuals involved. It is not about control, from either end. “I do not want to tell my assistant what to do”, says Tim. “I want him to love what we are doing together.” Friendship trumps service. (This reminded me of the day someone asked Tim if he would like to be famous. “Only if all my friends are famous too”, he replied.)

The quest for the ideal support went hand in hand with another quest, equally elusive. We felt that this projected little cluster of individuals, each supported in his own home, needed a more robust context than our few families and our friends could provide. We actively sought a trusted organization that would partner with us, strengthen what we were doing, and keep it going when we could not. 

When Tim was twenty-one, a small Anglican parish where we had all been welcomed for a considerable time passed a motion to establish a trust. The goal was to keep our young people where they were already known and supported, in or close to the family home, in the parish where they were among friends and teachers and neighbours. Individual plans were developed by the families, and MCSS was initially encouraging.  (Their professed goal being to support people in community.) After two and a half years of hard work by the rector and his very inclusive board, the plans were not funded.

Nearly a decade later, five families received an invitation from L’Arche Daybreak, in Richmond Hill, to help them explore how Daybreak might connect with families outside their community. We met every two weeks for three and a half years. L’Arche focuses, uniquely in the human service world, on community and relationship. They foster a sense of belonging over mainstream inclusion. What we hoped for was a kind of associate membership for our offspring that would allow them to stay where they were, and that would allow both L’Arche and the families to pool their strengths and find new ways to share life. Daybreak was excited, but the wider L’Arche Federation was not ready for what appeared to be a storming of the gates.

Meanwhile, Tim’s circle was gradually learning about the places and spaces that gave Tim energy. 

There were the meetings of Bridges-Over-Barriers in Guelph, hosted by Tim’s good friend Andrew Bloomfield and his parents. Half a dozen non-verbal autistic adults meet to converse with one another, slowly but with intense focus, through Supported Typing. Their facilitators stop talking and listen. The interlocutors speak from the heart and are deeply supportive of one another.

There was the farm in Gilford. A small farm, pioneered by another old friend of Tim’s with complex, high needs, through the generosity of his family and the willingness of a faithful support person to become the farmer. Tim and several others with similar challenges found deep friendship, work among the animals, and time for some very moving conversation on farm days. As one man remarked, “The farm is a real place without false people.”

There were the Friday evenings, over several years, when Tim and I joined the worship service at L’Arche Daybreak. Tim always took in the scene with intense interest. He was clearly at ease there, watching the assistants and the core people settling in happily together. We were in good company, and nobody cared if Tim made noises or checked the light switches and realigned the potted plants.

All these venues, be it noted, are places where people with high needs “congregate” together. Given the now dominant narrative in the world of disability, this may seem strange. They are not supposed to enjoy that. What makes the difference – the crucial difference – is the accompaniment by those who are in league with them: who value and love and respect them. These were the places where Tim kept leading me, and where we both found friendship and energy and joy.

In 2009, when Tim was forty-one, we left Ontario, our friends and Tim’s individualized funding behind, and moved to Antigonish, a small university town on the north east coast of Nova Scotia. We had never visited this province, but by this time we had two children and four grandchildren in the Maritimes. Tim’s brother Stephen had recently joined the teaching staff at St. Francis Xavier Un. and his sister Heather was working at the Un. of New Brunswick in Fredericton. Stephen had told us about a small L’Arche community here, well supported by both the university and the town. Once again Mike and I wondered if we might be able to work out some arrangement with this community; to support L’Arche and have Tim supported by them in a way that Tim could endorse. We found a house on a cul-de-sac with a self-contained apartment, and Tim and his father and I and the family cat came to Antigonish.

Seven weeks after our move, Tim’s father, who was a huge part of our lives and of Tim’s support, died very suddenly. Three members of Tim’s Toronto circle, and a long- time support person, flew down for the funeral. The circle members knew the Director of L’Arche Antigonish, and they brought him to our house after the funeral. Four days before Mike’s unexpected death, a student at St. FX, whose home was Cape Breton, had moved into our apartment to give a few hours a week of support to Tim. She had worked that summer at L’Arche Daybreak with the son of the good friends and circle members who had come down for the funeral, and it was they who had recommended her, some months earlier, for Tim.

Kristen was with us for four years, through her undergraduate and graduate work in education, and she and Tim became fast friends. The L’Arche director kept popping in to see how we were doing and invited Kristen and Tim to participate in as many of the community activities and celebrations as Tim could handle. When Kristen married and moved away, L’Arche used the apartment for some day activities for their handful of seniors, and it was a delight to have them among us. Very gradually, over seven years, Tim came to know and love the community. In the end he was adamant that he wished to become a full member and live in a L’Arche home with his friends, “not all of whom are handicapped”, he said.

I was told, throughout these years, that L’Arche was not funded for people like Tim, who need one on one support. The fact that he had a strong relationship with both assistants and core people did not carry weight with the Department of Community Services. Tim was offered placement elsewhere, which we declined. Fortunately DCS had recently gone public about their support for “choice”, and Tim had clearly chosen L’Arche. After a two-year struggle the funding came, and at forty-eight Tim moved into the community, where he lives with two friends and three assistants in one of the L’Arche homes.

The move was huge for both of us. Tim has always loved home, and still does. But in those thin, hard years without Mike he needed a fuller life than his mom alone could provide. He was telling me that he needed a home away from home, “because I need a self of my own to be at home in.” It is others who help us to know who we are.

Tim and L’Arche have made phenomenal adjustments, and Tim has grown in ways I could not have imagined. They support him generously with communication training for his team, with his special diet, and bear the burden of his OCD. There is always a friend to take him for a walk if he finds an activity or a celebration too much. Without needing to be always at the centre of things, Tim thrives on the life around him. He expends a lot of energy processing what he is seeing and hearing, and his insights are remarkable and often humorous. The leadership work hard to honour people’s choices about where and how they live, and Tim knows now that they really listen.

Wherever he is, he has many challenges and emotional ups and downs. Having lived most of his life in the heart of Toronto, he says Antigonish is boring. Yet he is very conscious of the goodwill and kindness here, and as a man who needs to keep moving, he truly appreciates the peaceful trails and beaches that beckon all around us. Most of all he appreciates his family and his friends.

Tim and I have one day every week together, at our request, and many weekends and holidays. I see him every day on his walks through campus and town. We are deeply connected. 

One cannot engineer life, let alone perfection. The litmus test is Tim himself, and he is well. He is held by a kind and caring, if at times chaotic community. His brother and sister-in-law are patient walking companions and allies. His sister, who keeps up with L’Arche Antigonish through technology, materializes with astonishing speed from the wilds of New Brunswick, when a pandemic does not close borders. 

Cape Breton is a forty-minute drive from our door. As Tim and I wander the long beaches, I know that we two are now close to the end of a rainbow. There is no pot of gold, even in Cape Breton. There is the day and the moment and a deep and heart-felt gratitude that we are here, in this beautiful place, and that we are together. 

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